5612969 INSIGHTS FROM AN ENGAGEMENT EVENT TO SUPPORT COLLABORATION BETWEEN CHILDREN WITH SICKLE CELL DISORDER, THEIR FAMILIES AND HEALTH SERVICES
Authors: R. Roberts, A. Satar, K. Pillay, O. Wilkey, J. Younis, A. Leigh
Journal: HemaSphere (2023)

Introduction: The APPG inquiry into sickle cell disorder (SCD) services found “serious care failings,” detailing SCD patients avoiding hospitals due to fear and lack of trust.1 It is often said that patients and families ‘do not engage’ or are ‘hard to reach,’ reflecting that services are not always accessible. Aims: In response, we organised a collaborative event reaching out to children and young people (CYP) with SCD and their families in a fun, accessible way. This aimed to test the theory that in an alternative and informal environment, there would be significant uptake of health promotion opportunities. Methods: The organising committee invited patient and parent representation, working closely with targeted charities. Three NHS trust charities contributed to funding and Tottenham Hotspur provided the venue. The event was widely advertised through health services via mailing lists, flyers and social media. Health promotion activities included Expert Panel Question and Answer session, myth busting and research stalls, transition workshops and complementary therapies. Performances from the B positive choir, celebrity DJing, arts and crafts, outdoor games and dance ensured the event was entertaining. Additionally, there was a session on career advice, as suggested by one of the patient representatives. Volunteers collected written feedback with open questions aiming to identify what attendees enjoyed, learnt, and improvement suggestions. Results: The event proved popular with 212 people cared for by 24 trusts (across London, Bedfordshire, Bristol, Cambridgeshire, Essex, Hertfordshire and Kent) registered in addition to their friends and family members. Despite train strikes on the day, 123 adults and 153 CYP across a range of ages (15% 1-4 y/o, 29% 5-10, 39% 11-15, 20% 16-18) attended. 64 submitted event feedback. We asked carers and CYP what was most valued about the event. Responses demonstrated: 61% said education about SCD, particularly learning about general management and emerging treatments such as gene therapy. 44% stated Fun and Enjoyment encouraged positive engagement for children and families rather than solely focused on health education. 16% valued the Sense of Community through connecting with other families as well as professionals in an informal setting. Conclusion: This demonstrates the feasibility of large-scale public health events through collaboration with stakeholders. There is demand for accessible, inclusive, and fun educational events in non-clinical settings. The high proportion of attendees learning more about SCD shows this does not detract from educational gain, but can strengthen care in an empowering way. It is important that the event feedback shapes further work. Attendees including families with newly diagnosed children were invited to peer support groups and people signed up to be informed of future events. Future plans include: Hosting similar events with interested networks. Event development to include more interactive workshops, events for young adults and opportunities for CYP and families to connect and form supportive communities. Deep Dive Event into the Experience of Care to investigate and guide what improvements can be made to SCD services. Reference 1. All Party Parlimentary Group (APPG) and the Sickle Cell Society, No One’s Listening: An Inquiry into the Avoidable Deaths and Failures of Care for Sickle Cell Patients in Secondary Care 2021 https://www.sicklecellsociety.org/wp-content/uploads/2021/11/No-Ones-Listening-PDF-Final.pdf